What About the Siblings? – 6 Tips from Siblings of People with Autism

This past Sunday morning I was in Seattle at the US Autism & Asperger Association Conferenceand fortunate enough to catch a panel on “Siblings of People with Autism.” The Panel had five young, neuro-typical men and women ranging in age from 14 to 27, each of whom have siblings on the autism spectrum. I was impressed by the poise, sense of humor, courage and wisdom of this panel and just wanted to pass on a few pointers for parent that I took away from the panel.Open up a channel of communication with your neuro-typical child – All 5 panelists understand that their parents need to spend more time with their sibling on the spectrum, and don’t really seem to resent that fact. They just want to occasionally be asked how they feel about all of it. And it’s not really a time for you to talk. “Don’t feel you have to lecture or provider more answers…just listen.” Just asking about it let’s the child know it’s ok for them to talk and even voice complaints about their situation or feelings.

Talk about bullying – It’s a typical sibling instinct (for both girls and boys) to jump into the thick of things to defend their sibling on the spectrum from bullying. So they’ll do it, but often it’s a scary or uncomfortable feeling. Sometimes just a word from you like, “If you see your brother being bullied at school, find a teacher and tell them about it” – will remind them they don’t have to take on all that responsibility by themselves. At a minimum, they may pause to notify someone to get help before they step in. For other tips on how to proactively prevent bullying please check out “IEPs, IPads and Bullies – 10 Tips from a Dad Who Has Been There”

Start planning early– for when your child on the spectrum becomes an adult, AND for when you are no longer able to watch over him. There were several talks on this topic over the weekend at the conference. In a country where most Americans haven’t properly prepared for their own retirements, let alone that of a special-needs child, this is a daunting topic . As your neuro-typical kids become young adults they’ll start to think and worry about this, and be prepared to talk about it. One woman on the panel already knows that she would be her brother’s legal guardian should anything happened to her parents. Others weren’t sure what kind of plan was in place. The comment that took the cake (and brought tears to my eyes) was when the 14-year old girl on the panel said, “Well, I’m still a little young to be thinking about what will happen when my parents die, but I’ll take care of my brother.”

Preparing their friends – As kids, and young adults, most panelists became accustomed to giving an “Autism 101” talk to their friends before they first meet a sibling on the spectrum – just to let them know what to expect. One woman told a hysterical story about her little brother Mikey who went through a phase when he was younger. I paraphrase, “Mikey was really into rain boots…… Just rain boots. One time I had my first boyfriend over the house and Mikey walked in wearing nothing but his rain boots.” – On a more serious and actionable note, many parents are now going into their kid’s first-grade classrooms to explain autism, so that kids (and their teachers) get a better understanding of this early on in life.

The “R” word – Related to the above, one word that really can be upsetting to people is any derogatory / casual use of the word “retarded”. They often have to explain to their friends why that is upsetting.

“Pockets of normalcy” – At some point your kids may seek “pockets of normalcy” – times when they can experience life as though they didn’t have a sibling on the spectrum. This may lead them – when they are old enough – to spend more time at their friend’s house than at yours. “Our house was always a mess and crazy. I spent most of high school at friend’s houses.”

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

My younger brother was placed on the spectrum when he was almost 2; I was almost 5. I didn’t think that his behavior was weird or out of place because it was all I knew. He was different but why is that bad? We had an verbally abusive father growing up and I was very protective of him, (still am). As we grew older, I would take him to parties, games, and other normal teen-age outings. Through our relationship, he was given the chance to socialize and build life skills that he would not have gained alone. He took those skills with him to NY where he spent 5 years getting a BA in Fine Arts with a minor in Sociology. I adore my brother; I would not have changed a single thing about how he & I interacted and grew up together. It’s made us who we are today.

I wish I had this 12 years ago when number one child was getting all the attention (therapy 4 times a week) and number 2 wanted to go into the big room and play like his brother. Everything the panelists said rang true to my childrens situation. I am lucky that my neuro-typical child and my diagnosed child are nice to each other

Eric,
Thank you so much for this post and for sharing what you gained from the panel discussion. Our eight year old son has autism and our six year old daughter is typically developing. Her questions about her brother started coming early, and they have not stopped.
I have written several posts about conversations that I have had with my daughter about her brother. I think this one might be a good one to share with you.http://www.cheairsgraves.com/2011/02/18/our-life/
Thank you again for sharing the words of wisdom from these siblings~

I think both I and my children can relate to what you’ve said.
My 11 yo son is on the spectrum and life can be very hard for the siblings (I have 7 altogether). The eldest who’s at uni spends as little time here as possible and had to really “prepare” his girlfriend before he brought her home the first time. You see…Eric loves girls and tries to lure them and lock them in his room. Don’t get me wrong, he has the mind of a 6 year old they tell me and doesn’t have anything devious in mind…he just likes to have them all to himself.

Self Defense classes should be held for kids with disabilities. This should be part of the social program they are involved with (and it’s good PT/OT). I noticed that some of the private schools are providing that and the public schools need to be more vigilant on making sure paras and other buddy students are in place for our kids. It’s everyone’s responsibility (not the siblings) to keep bullying to a minimum. We all know this causes scars and depression for the person they abuse. Schools need to be Very Strict on this (as in the past, they were NOT strict enough). Children that “snuff out” bullying or bring it to the attention of a teacher should be Rewarded (they used to call these kids snitches to intimidate now they are looked at as compassionate and helpful). As far as avoiding the situation, this can also be development of a young adult. I avoided my household because of an overbearing and emotionally abusive Dad. My husband avoided his home because of a divorce situation and a severely depressed Mom but most kids I know are just looking to “avoid” anyhow and “create” independence. I wouldn’t take it personal. My son has a younger sister who cracks me up. She introduces her brother to everyone and she’s quite assertive. We actually have to “back her off” so that he can grow and do his own initiating. Siblings are funny. Then the older one is embarrassed a bit but doesn’t talk about it. When his younger brother complained that he had to take his hat off in church, the older one got mad. The younger one was raising it up (in his hand) and I had to physically lower his hand 3 times. Finally, I asked him, “Why are you raising your hat in the air?” to which he replied, “I have a question for the priest.” LOL It just so happens his hat was in his hand at the time. I told him that you ask questions after the mass, we are here to listen to the word and story of the priest. My oldest was all bent out of shape by this (and it was a minor event). In fact, I got a compliment on my children before we left on how well behaved and friendly they were. My middle (asd) son stated, “I really liked that.” when the special African gospel music stopped and people nodded in agreement. Sometimes our kids need to learn how to be less “uptight” and they have to realize that is “their” problem, not their siblings. That THEY have problems and things they need to LEARN socially as well.

I have twin boys, both on the spectrum, when they started complaining about bullying and the school did nothing, I first warned the teachers/principal of this advice to my boys: “If someone gets aggressive against either one of you or nags the living daylights out of you… one holds tight, the other hits…You choose, face or tummy…Bullying stopped instantly…

That’s great – there is too much pussy footing around bullying at school – zero tolerance is just that – zero tolerance. Self reliance is just that – self reliance. Your lads learned a lot from your action. The principal learned a lot from you too.

My son was diagnosed three years ago with Autism/ADHD and his Kumon teacher introduced me to a natural product made from milk, after its production it﻿ is the closest to Mothers breast milk. Thirty years of research have gone into this product by Scientist and Doctors. This product has been scientifically and clinically proven. I tried it and in two months I saw improvements. Today my son shows no signs of Autism/ADHD, and he is doing remarkably well, focused on his school work..gets A&B and takes the initiative to do everything for himself, truly a turnaround from the way he used to be. If you are interested to find out more about this product, please email me at asha.persaud@gmail.com. Thank you.

i have a boy and a girl and my daughter is so over protective of her brother (his on the spectrum) his 6 and his 3 but she is very smart and speaks with confidence every time we go out and the kids to off and play i see her telling the other children her name and then he introduces her brother and demands that they say hi and include him in there games and because of her speaking out he has actually been more responsive to his peers around him try to communicate more and play alone side the kids instead of his own there are sometimes where she gets so frustrated with him and she does get jealous but i truly believe that she would take good care of him if i should pass on

I feel strongly on this subject and of course can speak only for myself (and my sons) when I say that no matter what the circumstances may be, my children are not responsible for caring for their sibling(s). I cannot in good conscience place even the idea of that on them. Planning for my childrens future, including the long-term special needs of my disabled child is my responsibility. None of my children had any say in being born or in their siblings being born, LOL! They are entitled to live their lives responsible only for themselves. Whatever they choose to do for their siblings is exactly that…a choice.

So much work and planning must be done before I pass (God willing I have enough time) About the planning, I will give the advice given me: start now, or yesterday ; ) …seek the advice of a qualified attorney who specializes in special needs estate planning. That’s expensive, so look for the free estate planning seminars offered. The word “estate” can be misleading. You don’t have to have money or assets for estate planning to be absolutely necessary and vital to your childrens future.

PLEASE ANYONE, correct me if I’m wrong on any of the following:
For example, one of the most recent Social Security Laws (which change change change ever year!) states that FIVE YEARS before your child reaches the age of emancipation (18), he cannot have more than $___(I’m sorry I am not sure of the correct amount so I don’t want to guess) in his or her name or he may not qualify for Medicaid. This includes things we may forget, like savings bonds.

I am 18 years old, and my brother lies on the autistic spectrum. We are very close in age, him being only 18 months younger than me, and so I grew up to be very protective of him. In some ways I acted like a bit of a nagger and would sometimes correct him on behaviour more than I should have. As a neuro-typical sibling, I felt that I needed to protect him. Fortunately for my family my brother is very high-functioning and affectionate, but like many other teenage siblings of those on teh spectrum, it took years for me to actually invite people into my home. I was both embarassed, and protective of my brother. I loved him dearly, but I knew that most people wouldnt understand his eccentricities. I have known since the age of 11 that I would one day care for my brother. This is not a burden for me but has made me plan for my future in a way that most teenagers don’t. I love my brother and would not change him, but I wish some resources had been more available to me as a sibling.